Where We Enter: Black Women and HIV-Prevention Research

Only the Black woman can say 'when and where I enter, in the quiet, undisputed dignity of my womanhood, without violence and without suing or special patronage, then and there the whole ... race enters with me.' -- Anna Julia Cooper, born enslaved in 1852 but in 1924, the fourth Black American woman to earn a doctorate degree

The HIV/AIDS epidemic is a Black woman's issue -- a clear-cut, yet complicated, consequence of Black women's disempowerment, sexual and reproductive oppression and high rates of gender-based violence. Poverty and violence are key drivers of black women's vulnerability to HIV and AIDS. More than 23 percent of U.S. Black women live in poverty, and Black women and teen girls experience disproportionately high rates of community and intimate-partner violence. The epidemic also disproportionately affects Black women because they have been getting infected with HIV since the U.S. AIDS crisis began in 1981, but the epidemic raged unchecked for 10 years before public-health experts acknowledged this truth. So while we comprise less than 7 percent of the U.S. population, we comprise 66 percent of women living with HIV, or about 20 percent of the U.S. HIV-positive population.

These facts beg the question: When and where do Black women enter the fight to end the epidemic in our communities?

In the past several years, scientific advances in how to use pharmaceutical medications to prevent HIV transmission have occurred rapidly and yielded remarkable results -- and some of these discoveries have involved Black women. We know that behavior interventions do work, but not effectively enough alone to reduce rates of new HIV infections. And anti-retroviral drugs -- the medicines that help HIV-positive people stay healthy and live longer -- can also be effective in preventing HIV transmission. By combining behavioral approaches with the biomedical tools being developed, the end of AIDS now lies within our reach, the HIV advocacy and scientific communities and U.S. government agree.

But thus far, studies on Black women have been conducted in Africa in ideal clinical-trial conditions. Other than small safety studies, very few Black women in the U.S. have participated in these clinical trials. Our incidence rates are high for the U.S., but not high enough compared to the rates in other countries to enroll Black American women in big, international trials. Given this scenario, how will U.S. Black women utilize these drugs in real-world settings -- and will these drugs actually reduce their vulnerability to acquiring HIV? That remains to be seen. The studies currently underway do not reduce women's need for: effective, culturally relevant behavioral interventions; reductions in gender inequities and more community-level interventions; or female-controlled prevention options such as female condoms and microbicides. But they do provide opportunities to increase women's health and research literacy; spotlight the intersections of HIV, reproductive health and violence against women; help the U.S. achieve the aims of the National HIV/AIDS Strategy; and advance advocacy on special populations of women, such as sex workers and victims of intimate-partner violence.

When women learn to take charge of their health -- whether about HIV or other chronic or life-threatening issues -- powerful and inspirational transformation takes place. I have witnessed even the most marginalized women become leaders and advocates, pressing critical matters that Black women need to hear and to heed, and demanding that research strategies, such as the ones that are soon to impact them, include them from the beginning.

Dazon Dixon Diallo is the founder, president and CEO of SisterLove, a reproductive-justice organization for women, with a focus on HIV/AIDS.

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